As I’ve mentioned in previous posts, I would love to just have a few minutes in Courtney’s head. I think the first thing I would want to understand is her sensory system. Why do things like running water turn on her fight or flight system as if she just ran into a bear?

Our bath time routine goes like this…Alyssa and I go up to the bath. Alyssa will get in as the tub is filling up. Courtney doesn’t join us until the tub is filled. Why? Courtney can’t handle the sound of running water. Especially in the tub. She actually has goals with some of her therapy to tolerate running water while playing in the sink. Sounds kinda silly, right? Not when washing hands is probably one of the most important life skills!

When it comes to working with sensory issues, you work on desensitizing the person to the stimulus that is sending their sensory system to high alert. So for Courtney, doing something she enjoys doing (playing in water) while exposing her to the stimulus (running water) that sets off her sensory system helps desensitize her.

So back to bath time. Tonight was a tough one. Both girls were in the tub. They were both happy as I lathered them up with soap. Alyssa then loves to layer up anything that is in the tub. During tonight’s bath time, it was the faucet. Courtney saw Alyssa playing with the faucet and it immediately sent Courtney to fight or flight mode. I actually have been practically face to face with a bear and I didn’t react as scared as she was of the possibility of the faucet being turned on.

We some how survived the bath time. I was soaked by Courtney’s wet body trying to cling on to me as she continued to melt down. I also had Alyssa crying as she couldn’t understand why I asked her to stop putting soap on the faucet. (Mind you, she was never going to turn it on. She knows that will scare her sister.) Alyssa went to spend quiet time with Joe on the couch while Courtney and I emotionally recovered from the ordeal. I watched her with tears rolling down my eyes as her body slowly eased and her happy self return.

I have a few different people I will send a venting text to after moments like this. Tonight’s was to my friend from work. Her response was perfect…”That has to be so hard! Little things we take for granted and can block out, can be so debilitating to her.” So true. You know what, running water in a tub is loud and annoying. But I can block it out and not let it bother me. To someone like Courtney, that sound is only louder and on top of it, they don’t have the ability to just block it out.

Courtney and I recovered. We were smiling and giggling together until she finally fell asleep.

I love her look of determination and accomplishment as she stood at the top of this rock wall at a park.

As I look at this picture I can’t help think of the mountains she will climb in her life. Probably literally and metaphorically! , Some rockier than others and some steeper than others. Some mountains will be easy for her to get to the top of but some will be hard. But I have confidence she will reach the top of these mountains. We have worked so hard at building her a support system that will help her tackle these mountains. No matter how long it takes her to tackle the mountains that lie before her, we will be cheering her on and ready to pick her up any time she slips. Now for those literal mountains she wants to climb…she better slow down before she gives us all a heart attack!

Dear Courtney,

Can I have just 5 minutes in your head? Maybe, just maybe it will help me make life a little easier for you.

Those 5 minutes could possibly tell me why the sound of running water and vacuum cleaners sends your sensory system on high alert.

Maybe those 5 minutes can explain why you get so frustrated that you bite yourself.

If I had 5 minutes in your head, maybe it will help me understand why it’s so hard for you to fall asleep at night.

I would have loved 5 minutes in your head this morning. It may have given me insight of why you didn’t want to eat and you couldn’t tolerate therapy.

What’s going on in your head when you are in the midst of a repetitive play scheme? When you take one of your Brown Bear or frozen figurines, walk a lap around the family room, jibber jabber some sort of script and then repeat with the next figurine? Can I take a sneak peak then?

I feel a simple 5 minutes in your head can tell me so much. I’m sure no where near enough though. But until I can get those 5 minutes, I will continue to do my best to guess what is going on in your head. And if I can’t figure it out, know that no matter what you do, I will always love you.

Nearly 5 years ago we brought our sweet little Courtney home from the hospital. I was a ball of emotions that day. The books don’t prepare you for the emotional roller coaster you go through at the beginning. I kept breaking into tears. I vividly remember my older sister calling me that first night home and right after she asked how I was doing I became an uncontrollable sobbing mess. Some how in between the sobs I was able to tell her that The hospital sends you home with this tiny human being trusting you will know what to do. I suddenly had no clue. My sister , mother of 5 boys, reassured me by telling me she had the same emotions bringing home her boys. I decided to trust her in knowing that I had this.

Nearly 5 years later, as I put Courtney, my non-verbal 4 year old with autism, on the bus for her last day of summer school and then watch my little 2 year old miracle child sit on the bottom step putting her own shoes on, I broke into tears again. (For the trillionth time since that night when I first brought her home.)

Ok, Cheri, you were right. I’ve got this. I’ve got this motherhood thing down. Don’t worry, I know the ups and downs of parenting has just begun, but I’ve got this.

A little shout out to both of my sweethearts…Courtney, I’m so proud of you for handling summer school like a champ. I don’t give you a break. Most kids at your age get to enjoy a couple of months of summer. You get 1 month and even then, half of that month will be spent in hours upon hours of play therapy. Alyssa, I’m in awe of your strong personality every day. You are such an awesome little sister to Courtney and a joy to be with all day (even during your tantrums). I’m so proud of how you are handling your health issues as we figure out your food allergies. Girls…we’ve got this!

I look at pictures like these and I can’t help but think of how far the two of them have come the past 3 years. Let me rewind three years…

Three summers ago Courtney was 22 months old. She had zero words (though if you were really lucky, you would hear one), not responding to her name, not interacting with other kids and pretty much in her own world. Happy and healthy and meeting all milestones except language ones.

Watching Courtney regress wasn’t the hard part. The hard part was convincing Joe that something was up with his little girl. At this point I was just trying to convince him she needed speech therapy. Three summers ago there were so many arguments and so many tears over it. At this point I suspected autism and I did throw that label out there in discussions but I had to back off and just discuss her language delays. It made me so mad that he didn’t trust my opinion being that I had spent so many years teaching children with autism.

He finally agreed to looking into private speech therapy. I decided at this stage that o really needed to be careful about using the word autism around Joe. He wasn’t ready. I remember telling her speech/language therapist that I suspected Courtney had autism but not to use the word around her dad.

A year later, by the time we were about to get her evaluated through the school district and by a developmental pediatrician he was a little more ready to hear the diagnosis of autism. But he still felt strongly that all it was going to take was a year in preschool and she was going to be talking up a storm and acting more “normal”. Though I would get frustrated with his lack of true understanding of Courtney and her development, I had a better understanding that joe needed more time to come to terms with it.

It took time but he’s there. He now is just as much of an advocate for his little girl as I am. He gets her. He understands her needs and why she has these needs. Thanks to Alyssa being such a mommy’s girl and having separation anxiety, joe and Courtney have formed a special bond. I love capturing moments between the two of them. The moments where you can see that she loves her daddy so much. I’m so proud of both of them!

What does S.I.B. stand for? Self injurious behavior. Meaning injurious behaviors that you do to yourself such as biting yourself. Courtney has S.I.B’s and they come in the form of biting her hands and arms. Mostly she does it when frustrated and or to escape something that is too hard. Or even to escape something she doesn’t want to do. You may have noticed in some pictures that Courtney wears a red object on her shirt. That is a chewy and it’s there for her to chew on in hopes it decreases the biting. Overall it does. She chews on that thing all the time. Wish her arm wasn’t her go to but glad we have something to help decrease it.

So things like changes in routines, over stimulation, new places can set her off and cause this behavior to increase. That includes something like a 4day vacation at a fancy hotel with fancy dinners. So needless to say, as much as we have had a fantastic time on our trip to Mackinac Island, the picture I’ve been posting have hid some of the frustrations. Here’s a picture that shows the behind the scenes of taking a child with autism out of their comfort zone…

Those are bruises on Courtney’s arm from her biting herself. Scares me because someone could mistake those as my hand marks. Breaks my heart that she bites herself hard enough to leave bruises. These weren’t just from our vacation. We’ve seen an increase since her summer break has started. It took my friend to remind me that summer break brings lots of changes. Change in schedule, change in teacher, mom and dad home…all things that can set behaviors off. The last full day of our vacation is when it was at it’s worse. She bit herself over and over again. She even tried biting joe, Alyssa and I. I said at dinner that you can almost see it in her eyes. To me, her eyes looked like she was ready to attack. There was a dark look deep in those eyes. She had hit her limit.

Some how we made it through the dinner. After dinner she went after Alyssa again and that’s when I decided we needed to separate them for a bit. Courtney and I went back to our room where I let her just relax and play while Joe took Alyssa to the porch of the hotel where she got to charm all the adults in the hotel. Courtney relaxed almost immediately. My heart was happy again. Killed me to not spend our last few hours together as a family but knowing both girls were happy doing what they needed to do made me feel better.

“Here’s a rest stop with a big field for Courtney to run. I’ll run with her.”

5 years ago when he first took me Mackinac Island, MI I was almost 7 months pregnant with Courtney. We were on our “baby moon”. Joe talked back then how we would do this trip annually with our family just like he did growing up. He talked about how perfectly well behaved our kids would be all the time. I always chuckled knowing that no child could possibly by “perfect” 24/7.

If you haven’t read it before, you need to read “Welcome to Holland”.http://www.our-kids.org/Archives/Holland.html. It describes so perfectly how I feel about raising a child with a disability. No, this is not the journey we imagined 5 years ago but I love this journey! I’m so glad we are on this journey.

5 years ago we didn’t talk about how our long car rides are going to need to include a stop at a park and or field for Courtney to run. We didn’t talk about the big Rubbermaid container we were going to have to pack of Courtney’s food. We didn’t even consider having to bring a cooler just for 3-1/2 gallons of special milk. But life barely ever turns out as you planned, right? We may have planned for Italy 5 years ago, but our wild trip to Holland is beautiful! Even more beautiful than Italy!

Alyssa and I have a lot in common but it goes way beyond her being my mini me. Her and I are both part of the special needs sibling club. Alyssa and I both have a sibling with special needs. Being a part of the same club has helped me remember that I have to pay extra close attention to how decisions I make for Courtney may also effect Alyssa. Already, Alyssa’s life is revolves around Courtney’s therapy schedule. Not a day goes by where I don’t think about how this could effect Alyssa some day.

But it’s more than our daily schedule. My expectations of how they behave in certain situations is different. I discipline Alyssa differently then I discipline Courtney. If Alyssa could tell me, I’m guessing she would say that Courtney gets away with things. It is my job to make sure Alyssa doesn’t resent Courtney for these differences.

Monday morning was a tough one. Courtney had gone to bed late the night before so I had to wake her to get ready for school. Alyssa woke up super early so by the time Courtney woke up, Alyssa was extremely crabby and ready for a nap. By the time Courtney woke up, we had 20 minutes to get her fed and dressed before the bus came. She was very irritable and aggressive during these 20 minutes. She requested the black Ipad which Alyssa had at the moment. I nicely asked Alyssa if Courtney could use the black Ipad. Of course Alyssa replied no. Frustrated by the amount of self biting Courtney was doing, I decided to just take the Ipad from Alyssa. Rightly so, Alyssa threw a fit. This didn’t self the problem with Courtney at all because now she was upset and over stimulated by Alyssa’s crying. So…now I had two kids screaming with the bus about to show up at any minute.

We got through that insane moment. But I was uneasy about how I handled that moment the rest of the day. Joe got frustrated with Alyssa when she was throwing her tantrum. I reminded him that she had every right to throw that tantrum. I ripped the iPad out of her hand to make her sister happy. How unfair is that to a little two your old. I know, you have to pick your battles and in the end, that one moment won’t damage Alyssa. But what decision of mine will leave Alyssa resenting Courtney?

The girls and I always spend Thursday evenings at my parent’s house. My mom use to watch the girls during the day and that is not possible any more. I want them to have a good relationship with their grandma and grandpa along with my sister and her family who also live there.

As I’ve mentioned before, the evening usually consists of Alyssa playing with her cousins while Courtney plays/climbs in a different room. Now that it’s nice outside, you will also find all the kids outside but usually Courtney is still doing her own thing. They have one of those big trampolines in their back yard which Courtney LOVES to play on. This Thursday that trampoline became my favorite equipment. The trampoline brought all 4 kids together. For 20 minutes, I watched them all jumping together and having just the best time. My heart was full! Unfortunately I didn’t get a picture of the awesome moment.

I did get a few pictures of another awesome moment. Before my mom became a full time Grandma/Nanny, she taught preschoolers with autism. Her job was her life. You will never meet such a devoted teacher as her. She loved her students like they were her own. You can tell it was so hard on her to make the decision to retire even though it meant she got to watch her grandchildren. I’m pretty sure Courtney holds a special place in her Grandma’s heart because Courtney brings her two favorite things together…grandchildren and autism. If it were feasible, I’m pretty sure she would love to be her personal teacher. When we were there this Thursday, Courtney got into markers. Courtney LOVES labeling colors. My mom and her spent several minutes just labeling the colors of the markers. Pretty sure my mom was on cloud nine during this special time with Courtney.

It was such an awesome Thursday! I love that the girls enjoy our time there and that I can still make it work in our crazy schedule.

I think the thing I have the hardest time with when it comes to Courtney is her struggle with peer interactions. I think I struggle even more now with it than ever as I watch Alyssa make friends and talk about them on a daily basis. Now Alyssa’s friends are mostly her cousins and then her friend Kayla, but she asks for these friends daily. Does she ask for these friends daily because she doesn’t have anyone playing with her at home? For the most part, Alyssa and Courtney do their own thing when playing at home. Alyssa is usually making up the cutest play schemes in her kitchen or with her princesses and baby dolls while Courtney is in another room labeling colors, numbers and animals or looking through books. They do occasionally like to rough house with each other which I always enjoy watching. I do work on them playing next teach other but it’s usually short live.

I love the bond that Alyssa has with her cousins but when I watch them play together while Courtney is doing her own thing in the other room, my heart breaks. I want Courtney to have that same bond with her cousins AND her sister. I know Alyssa and Courtney have their own special bond and nothing will ever break that.

I have to laugh…at the end of last school year and the beginning of this past school year when I addressed my concerns about her placement in a blended room, I explained to her team that Courtney sometimes struggles with playing even in the same room as her sister and cousins. I will never forget the principals quick response on how magical the transformation will be after she spends some time in the blended room. She told us we will be surprised how Courtney will now want to play with other kids. Well principal, I’m still waiting! Yes, I’m fully aware that it takes time but that wasn’t the way she put it.

Our home therapy is working on Courtney playing with Alyssa. When possible, Alyssa gets to join in on the therapy session. Right now they are working on increasing the time Courtney and Alyssa will engage in parallel play, meaning the two of them sitting next to each other playing but not necessarily interacting. With time, she will get there. I know I have to patient until she does. I have to remember they do have a special bond in the mean time.